Offline Patients Quarterly Newsletter
A discussion to collect ideas and discuss the forthcoming new handout for the purpose of communicating our support with patients who do not use computers
Published on: Mar 3, 2016
Transcripts - Offline Patients Quarterly Newsletter
Support Meeting for
Aspergillosis Patients & Carers
LED BY GRAHAM ATHERTON
NAC CENTRE MANAGER CHRIS HARRIS
NATIONAL ASPERGILLOSIS CENTRE
Fungal Research Trust
2.00 Tea & Coffee
3.00 Hot topics
Q & A from the floor or online
Offline support – nearly 50% of patients can only
access help & support offline
Quick read, promotes support groups (online &
Identified a need for better offline community
Need a way to provide more information
Promote more widespread support of patients &
Offline community building
Phone network manned by patient/carers
Content from the community, for the community
Q & A
Different parts of UK ??
Some content will be permanent reference
Phone number(s) of network organiser
Other contact number for services
Some one quarter only? (factual articles)
Some to be repeated annually? (Poems, Recipe, art)
Something to pick up and read in clinic or take with
Design the newsletter
Size – which is best?
How many pages?
Content written by patients AND carers – a story, an
Regular column to be written by patient/carer,
different one each month?
Get your thoughts back to me
0161 291 5866 leave messages
Letter to Dr G Atherton
National Aspergillosis Centre
Education and Research Centre
Wythenshawe Hospital, University Hospital of South Manchester NHS
Manchester M23 9LT
Stem cell latest
The story continues to develop
Next stage – get them working!
Stem cell latest
Easy stem cells!!
Paper published in Nature is possibly one of the most
important developments in stem cells for 20 years
Stem cell latest
Other labs are finding it difficult to replicate these results
There might be more to it – not as easy as first thought
Power of placebo
Placebos work due the power of our expectations. Here are some of the
surprising things that a placebo can do. Even the size and shape of the pill can
make a difference.
Placebos could not act as an antifungal and fight infection, but they can help
relieve pain, anxiety, stress, nausea and much more!
Insulting? Implies we are in control of some of our symptoms? Some studies
suggest that isn’t the case & a placebo reaches something deeply engrained in
us that has real physical effects. Scientists want to harness this power.
Help us regulate damp industry
Change.org – look for petition to Eric Pickles for
better regulation of the damp surveying industry in
the UK & sign – many thanks!
Suggest a subject
Can be on any relevant subject you would like to hear
our opinion or get our help with
Send suggestions to firstname.lastname@example.org
Pass notes to me at clinic or at the meeting
Phone them in (24 hrs) at 0161 291 5866
Stem cells proving to have the ability to help cure Tb!
(this was a surprise result – the experiment was only
intended to test for safety)
A group found that when they gave patients back their own
stem cells (patients who had infections that were resistant to
multiple drugs), three times as many as controls were cured
after 6 months!
Itraconazole may be useful to treat prostatic cancers!
Periodical for clinic is in development
An ‘expanded newsletter’ with news, information,
art, poetry. Probably do 4 editions.
“The best chance we have of beating this illness is to
Living with it, Working with it, Treating it
Fungal Infection Trust